Aryan Singh Deol with his father Gaganpreet Singh Deol and mother Harpreet Kaur Deol outside the family’s home in Surrey on Monday (Aug. 10). (Photo: Tom Zillich)

Aryan Singh Deol with his father Gaganpreet Singh Deol and mother Harpreet Kaur Deol outside the family’s home in Surrey on Monday (Aug. 10). (Photo: Tom Zillich)

Oh baby, what a birthday gift: $2.8M raised to help B.C. boy with rare disease

‘We are very thankful to everybody,’ Aryan Deol’s father says

As birthday gifts go, this one is pretty special.

Aryan Singh Deol celebrated his first birthday on Friday (Aug. 7), and on Saturday his parents learned that an online fundraiser has collected the $2.8 million needed for medical treatment to help him live a normal life.

Aryan’s parents, father Gaganpreet and mother Harpreet, said on Monday that it’s been a seven-month struggle for the Surrey family since their son was diagnosed with a type of Spinal Muscular Atrophy (SMA), a rare genetic disease that affects the central nervous system and voluntary muscle movement.

In March, just as the COVID-19 pandemic hit, friends and family rallied around the Deols to launch a GoFundMe campaign that aimed to raise a whopping $2.8 million to pay for a treatment called Zolgensma.

Now, the goal to help “Aryan’s Fight Against SMA” has been reached.

“We are very thankful to everybody,” Gaganpreet told the Surrey Now-Leader. “I don’t have words to thank everybody, but it was amazing that this happened. Sometimes I can’t believe that has happened, I am just very pleased and thankful to everybody.”

Aryan’s birthday was celebrated Friday with a fundraising party held at a banquet hall in Surrey.

“It was very nice. We didn’t expect that, so it was a surprise,” said Gaganpreet, a truck driver who moved with Harpreet from Vancouver to Surrey about two years ago.

Aryan was diagnosed with SMA last January, after his parents noticed his decreased movement.

Not long after the online fundraiser was launched, the Deols learned about a Vancouver-area baby named Lucy who was also diagnosed with SMA.

“We heard about Lucy in July and saw the news, that they raised more than $1 million in a few weeks, so we talked to them and asked how that happened, how they got on the news like that,” recalled Gaganpreet.

“So we started reaching out to the news channels, TV news, and then the Bollywood star, Neeru Bajwa, shared our post and people started to know what was happening. We did so many interviews, talk shows, and luckily we raised the money. I think we were at $40,000 on July 13, and it’s been great since then.”

Aryan has been getting treatment known as Spinraza, which has helped his condition, but Zolgensma is the more permanent – and expensive – fix.

“It’s a transplantation therapy,” Gaganpreet explained. “After some time hopefully it will be making 100 per cent protein and he will be normal, a normal kid. We are very hopeful – it’s a new treatment but we are very hopeful, after talking to other families in America and hearing what they say about it, and watching the videos and stuff like that.

“It is approved in America and it has worked for other kids, but every kid is different right, so it works different on every kid, it’s not working on everybody the same. But we are hopeful and we are thinking positive that it will work 100 per cent on Aryan.”

Now that the fundraising goal has been met, Aryan will be able to get Zolgensma through a program that gives access to such treatments to Canadians who have a life-threatening disease, Gaganpreet said.

“Aryan’s name is in that process so we can import that drug from the U.S., and it will be held at B.C. Children’s (Hospital),” the father said. “I just emailed our neurologist and told them we are ready to go and we have the money now.

“They will touch base and start the procedure from their side and they say maybe roughly a month, a month a half-long procedure for that. It will take a little while yet.”



tom.zillich@surreynowleader.com

Like us on Facebook Follow us on Instagram and follow Tom on Twitter

Healthcare and Medicine

Get local stories you won't find anywhere else right to your inbox.
Sign up here

Just Posted

Cedar Valley Lodge, LNG Canada’s newest accommodation for workers at the LNG Canada Project site in Kitimat. The most recent outbreak among workers at the project site was just declared over. (Photo courtesy of LNG Canada)
Second COVID-19 outbreak at LNG Canada Project site declared over

The outbreak was first declared on Dec. 16, 2020

CGL has closed down the two lodges affected to everyone except the essential staff. (Black Press file photo)
All COVID-19 cases associated with Coastal GasLink outbreak deemed recovered

Outbreaks occurred at CGL project accommodation sites in Burns Lake and Nechako Local Health Areas

Prince Rupert Branch of BC SPCA has partnered with the Greater Massett Food Bank to provide pet food to guardians in need during the pandemic, Joe Griffiths manager of BC SPCA said on Jan. 6. (Photo: K-J Millar/The Northern View)
Greater Massett Food Bank partners with BC SPCA

Greater Masset Food Bank has recently received more than 800 kg of pet food for those in need

High wind warnings have been issued by Environment Canada for Haida Gwaii and the North Coast on Jan. 5, 2021. (image supplied)
High wind warnings in effect for Haida Gwaii and the North Coast

Winds will pick up in the afternoon in exposed coastal sections

Provincial health officer Dr. Bonnie Henry prepares a daily update on the coronavirus pandemic, April 21, 2020. (B.C. Government)
B.C. adjusts COVID-19 vaccine rollout for delivery slowdown

Daily cases decline over weekend, 31 more deaths

A female prisoner sent Langford police officers a thank-you card after she spent days in their custody. (Twitter/West Shore RCMP)
Woman gives Victoria-area jail 4.5-star review in handwritten card to police after arrest

‘We don’t often get thank you cards from people who stay with us, but this was sure nice to see’: RCMP

An elk got his antlers caught up in a zip line in Youbou over the weekend. (Conservation Officer Service Photo)
Elk rescued from zip line in Youbou on Vancouver Island

Officials urge people to manage items on their property that can hurt animals

A Trail man has a lucky tin for a keepsake after it saved him from a stabbing last week. File photo
Small tin in Kootenay man’s jacket pocket saved him from stabbing: RCMP

The man was uninjured thanks to a tin in his jacket

Tla-o-qui-aht First Nation Chantel Moore, 26, was fatally shot by a police officer during a wellness check in the early morning of June 4, 2020, in Edmundston, N.B. (Facebook)
Frustrated family denied access to B.C. Indigenous woman’s police shooting report

Independent investigation into B.C. woman’s fatal shooting in New Brunswick filed to Crown

Delta Police Constable Jason Martens and Dezi, a nine-year-old German Shepherd that recently retired after 10 years with Delta Police. (Photo submitted)
Dezi, a Delta police dog, retires on a high note after decade of service

Nine-year-old German Shepherd now fights over toys instead of chasing down bad guys

Join Black Press Media and Do Some Good
Join Black Press Media and Do Some Good

Pay it Forward program supports local businesses in their community giving

Nurses collect samples from a patient in a COVID suspect room in the COVID-19 intensive care unit at St. Paul’s hospital in downtown Vancouver, Tuesday, April 21, 2020. (THE CANADIAN PRESS/Jonathan Hayward)
5 British Columbians under 20 years old battled COVID-19 in ICU in recent weeks

Overall hospitalizations have fallen but young people battling the virus in hospital has increased

Canada released proposed regulations Jan. 2 for the fisheries minister to maintain Canada’s major fish stocks at sustainable levels and recover those at risk. (File photo)
New laws would cement DFO accountability to depleted fish stocks

Three B.C. salmon stocks first in line for priority attention under proposed regulations

Most Read